Just writing to fill in some gaps left by my last email.
I will be starting chemotherapy tomorrow. The purpose of this chemo is
to try and get the disease into remission before going to transplant.
While they would like to get it into total remission, studies have
shown that there is not benefit in "flogging" the disease with round
after round of chemo. So, the present treatment will be six to nine
weeks (2 to 3 cycles) regardless of result. The new regiment is called
ICE, which stands for ifosfamide, carboplatin, and etoposide. This
regiment contains drugs that I didn't receive in the first round of
treatment (which was called Stanford V) with the hope that these new
drugs will kill cells that have to this point proven resistant. ICE
involves a 21 day cycle, with three infusion days (Days 1, 2, and 3)
with the full effect (or nadir) occurring on Day 7 through Day 14.
Because all of these drugs cause damage to the liver, bladder, and
kidneys hydration is very important. I have an at home IV pump that I
will hooked up to 24-7 for Days 1 through 5 to ensure that I receive
fluid levels high enough to prevent permanent damage. To learn more
about the ICE regimen, you can visit the links below-
http://www.chemocare.com/b
io/carboplatin.asp
http://www.chemocare.com/b
io/etoposide.asp
http://www.chemocare.com/b
io/ifosfamide.asp
For those of you in the Denver area, you are more than welcome to come and visit me during a chemo treatment. I will be undergoing treatment Weds, Thurs, and Fri. of this week and probably Jan 31 through Feb. 2. I will be at the doctors office from 8:30 to 5, please contact me if you would like to help drive. The doctors office is located at:
Arapahoe Park Medical Plaza
CHOA
Building One Suite 500
7720 South Broadway
Littleton, CO 80122
I can be reached at 720-939-5834
As for the Stem Cell transplant, I found that my bone marrow is clean
and I would be a prime candidate for an Autologous (donor to myself)
transplant. The major advantage to this type of transplant is that it
is easier to recover from and involves fewer short and long term side
effects. The downside is that long term remission rates are lower for
autologous transplants when compared to allogenic (donor) transplants.
It is believed that the immune system of the donor in an allogenic
transplant recognizes cancer cells and kills them were as when your
immune system is re-introduced after an autologous it might not
recognize and kill new cancer cells. There are a number of pros and
cons to both forms of transplant. If I respond to chemo well, I will
most likely undergo an autologous transplant, if I don't, assuming a
blood relative donor can be found, I will probably undergo an
allogenic transplant. This decision will most likely be made sometime
in mid-Feb. Of course all this assumes that the insurance company
agrees to pay for any form of transplant. (God Bless American Health
Care =-) I am looking at transplant centers in Denver, Stanford,
Minneapolis, and Seattle.
For more on transplants view the sites below-
http://www.webmd.com/hw/la
b_tests/tv7001.asp
http://www.webmd.com/hw/he
alth_guide_atoz/tv7978.asp
If you have any questions, please feel free to contact me.
Always,
Darrel
Tuesday, January 23, 2007
Relapse
After much delay, I finally went in yesterday afternoon to have my
biopsy and bone marrow scrapes performed. The surgery went very
smoothly. The surgeon was able to extract the node from my neck, thus
avoiding an invasive telescopic surgery near my heart.
That pretty much ends the good news...
The first half of my pathology report came back this morning and
confirmed the worse. I have some form of malignant nodal relapse, most
likely Hodgkin's disease. The pathology report will be in Monday to
confirm the nature of my cancer, but whatever the report shows, the
future holds pretty much the same result.
The first step will be to try and curb the growth of new cancer cells
by using Chemotherapy. Because my relapse is occurring so close to the
end of my last treatment I will receive a totally new set of drugs to
hopefully catch the disease off guard. Relapses are generally
considered harder to treat because the cells are generally resistance
to first line therapies.
After the cancer is under control, I will undergo what is known as a
stem-cell rescue or Bone Marrow Transplant. This is the WMD of cancer
treatment and is pretty much the last weapon in the Western medicine
treatment arsenal. It is a fairly involved process that I will go into
more detail about in a future email. If you would like to learn more,
visit the link at the bottom of the page.
Once everything is more firm, I will send out a more detailed email,
but I know many of you were waiting patiently to hear about what is
going on. I hope this gives you at least a vague idea.
I wish you all the best in '07
Darrel
biopsy and bone marrow scrapes performed. The surgery went very
smoothly. The surgeon was able to extract the node from my neck, thus
avoiding an invasive telescopic surgery near my heart.
That pretty much ends the good news...
The first half of my pathology report came back this morning and
confirmed the worse. I have some form of malignant nodal relapse, most
likely Hodgkin's disease. The pathology report will be in Monday to
confirm the nature of my cancer, but whatever the report shows, the
future holds pretty much the same result.
The first step will be to try and curb the growth of new cancer cells
by using Chemotherapy. Because my relapse is occurring so close to the
end of my last treatment I will receive a totally new set of drugs to
hopefully catch the disease off guard. Relapses are generally
considered harder to treat because the cells are generally resistance
to first line therapies.
After the cancer is under control, I will undergo what is known as a
stem-cell rescue or Bone Marrow Transplant. This is the WMD of cancer
treatment and is pretty much the last weapon in the Western medicine
treatment arsenal. It is a fairly involved process that I will go into
more detail about in a future email. If you would like to learn more,
visit the link at the bottom of the page.
Once everything is more firm, I will send out a more detailed email,
but I know many of you were waiting patiently to hear about what is
going on. I hope this gives you at least a vague idea.
I wish you all the best in '07
Darrel
Relapse
After much delay, I finally went in yesterday afternoon to have my
biopsy and bone marrow scrapes performed. The surgery went very
smoothly. The surgeon was able to extract the node from my neck, thus
avoiding an invasive telescopic surgery near my heart.
That pretty much ends the good news...
The first half of my pathology report came back this morning and
confirmed the worse. I have some form of malignant nodal relapse, most
likely Hodgkin's disease. The pathology report will be in Monday to
confirm the nature of my cancer, but whatever the report shows, the
future holds pretty much the same result.
The first step will be to try and curb the growth of new cancer cells
by using Chemotherapy. Because my relapse is occurring so close to the
end of my last treatment I will receive a totally new set of drugs to
hopefully catch the disease off guard. Relapses are generally
considered harder to treat because the cells are generally resistance
to first line therapies.
After the cancer is under control, I will undergo what is known as a
stem-cell rescue or Bone Marrow Transplant. This is the WMD of cancer
treatment and is pretty much the last weapon in the Western medicine
treatment arsenal. It is a fairly involved process that I will go into
more detail about in a future email. If you would like to learn more,
visit the link at the bottom of the page.
Once everything is more firm, I will send out a more detailed email,
but I know many of you were waiting patiently to hear about what is
going on. I hope this gives you at least a vague idea.
I wish you all the best in '07
Darrel
biopsy and bone marrow scrapes performed. The surgery went very
smoothly. The surgeon was able to extract the node from my neck, thus
avoiding an invasive telescopic surgery near my heart.
That pretty much ends the good news...
The first half of my pathology report came back this morning and
confirmed the worse. I have some form of malignant nodal relapse, most
likely Hodgkin's disease. The pathology report will be in Monday to
confirm the nature of my cancer, but whatever the report shows, the
future holds pretty much the same result.
The first step will be to try and curb the growth of new cancer cells
by using Chemotherapy. Because my relapse is occurring so close to the
end of my last treatment I will receive a totally new set of drugs to
hopefully catch the disease off guard. Relapses are generally
considered harder to treat because the cells are generally resistance
to first line therapies.
After the cancer is under control, I will undergo what is known as a
stem-cell rescue or Bone Marrow Transplant. This is the WMD of cancer
treatment and is pretty much the last weapon in the Western medicine
treatment arsenal. It is a fairly involved process that I will go into
more detail about in a future email. If you would like to learn more,
visit the link at the bottom of the page.
Once everything is more firm, I will send out a more detailed email,
but I know many of you were waiting patiently to hear about what is
going on. I hope this gives you at least a vague idea.
I wish you all the best in '07
Darrel
Pet Update Dec. 22
Now that the '06 Blizzard has died down, my doctors have finally had a chance to look at the PET scan I had on Wednesday. Unfortunately two extra days of waiting haven't brought me any extra luck.
This afternoon I finally heard from my doctor that the nodes that were positive on the last scan were still positive and had enlarged in size on this scan. In addition, there is a new node that has tested positive as well.
Before jumping the gun and calling this a relapse, I need to have the nodes biopsied to see if this growth is cancer or something more benign. I'll meet with a local surgen on Thursday to decide which node they want to take out. On the upside, the new positive node is in my neck and should provide tissue that can be easily reached. The other positive nodes are in the fat pad surrounding the heart and would involve a difficult (and dangerous) procedure to remove.
On Friday I will go into surgery and I should know sometime after the New Year what exactly is going on...
Could be nothing, could be something...
Time will tell
Hope is well with each of you and Happy Holidays!
Sincerely,
Darrel
....and so it goes
This afternoon I finally heard from my doctor that the nodes that were positive on the last scan were still positive and had enlarged in size on this scan. In addition, there is a new node that has tested positive as well.
Before jumping the gun and calling this a relapse, I need to have the nodes biopsied to see if this growth is cancer or something more benign. I'll meet with a local surgen on Thursday to decide which node they want to take out. On the upside, the new positive node is in my neck and should provide tissue that can be easily reached. The other positive nodes are in the fat pad surrounding the heart and would involve a difficult (and dangerous) procedure to remove.
On Friday I will go into surgery and I should know sometime after the New Year what exactly is going on...
Could be nothing, could be something...
Time will tell
Hope is well with each of you and Happy Holidays!
Sincerely,
Darrel
....and so it goes
Limbo
Well I can't say that this is not the e-mail that I was hoping to write when I left the house this morning to embark on the 7 hours of test that would determine whether or not I was cancer free and a candidate for remission. On the other hand, this is not the relapse email that I feared writing. Neither heaven or hell, but that undefined grey area in between is where this one falls...Limbo.
So what happened? Well, in simple terms, I am neither cured of cancer or actively fighting it. My definitive scan for cancer cells, the PET, came back with three positive "spots" in the lymphodes in the Mediastinal and Hilar area of my chest. (think high to mid-chest, around you heart or left nipple). Each of these nodes showed up enlarged and with level of metabolism consistent with cancer growth. It should be noted that none of these nodes were the ones involved in my original cancer growth, meaning if they turn out to be cancer, that the disease has spread.
So why is this not considered a relapse? First off, my doctors think that it is highly likely that my scan may be what is known as a false positive. From time to time patients who are cancer free will have a test come back positive for a number of reason I won't go into here. The doctors seem to think that it is highly unlikely, based on my initial response to therapy that my cancer would have return so quickly. It is more likely that this was a false positive. It is possible for the nodes in question to be biopsied, but due to there location next to my heart it would require a very invasive procedure to do so. At the present time it has been recommended to me that I wait for 6 to 8 weeks and repeat the PET scan to see if there is any change to these nodes. If the nodes are smaller, then they are not cancer and are nothing to worry about. If they are bigger, then they will need to be biopsied to determine the next course of action.
So as I said at the beginning, neither good nor bad, but a state of waiting.
All the best,
Darrel
So what happened? Well, in simple terms, I am neither cured of cancer or actively fighting it. My definitive scan for cancer cells, the PET, came back with three positive "spots" in the lymphodes in the Mediastinal and Hilar area of my chest. (think high to mid-chest, around you heart or left nipple). Each of these nodes showed up enlarged and with level of metabolism consistent with cancer growth. It should be noted that none of these nodes were the ones involved in my original cancer growth, meaning if they turn out to be cancer, that the disease has spread.
So why is this not considered a relapse? First off, my doctors think that it is highly likely that my scan may be what is known as a false positive. From time to time patients who are cancer free will have a test come back positive for a number of reason I won't go into here. The doctors seem to think that it is highly unlikely, based on my initial response to therapy that my cancer would have return so quickly. It is more likely that this was a false positive. It is possible for the nodes in question to be biopsied, but due to there location next to my heart it would require a very invasive procedure to do so. At the present time it has been recommended to me that I wait for 6 to 8 weeks and repeat the PET scan to see if there is any change to these nodes. If the nodes are smaller, then they are not cancer and are nothing to worry about. If they are bigger, then they will need to be biopsied to determine the next course of action.
So as I said at the beginning, neither good nor bad, but a state of waiting.
All the best,
Darrel
Radiation
Hi everyone,
Well, by a miscalculation by my radiologist I am finished with radiation today, five days earlier than expected. I can say that I am glad they caught their mistake today, as I have received the correct dose of treatment already and three extra shots would have left me a little over cooked. With radiation now behind me, I can that it's side effect to this point are nothing when compared to Chemo. Fatigue, burning in the chest, and an un-natural "sunburn" are all I have to show for the experience. Still, there are a number of long term side effects that I may yet encounter. These include shingles, fatigue, thyroid problems, heart and lung damage from the inaction of radiation and chemo drugs, Lhermitte syndrome (a break down of the covering on the spinal cord resulting in an electric sensation in the feet and hands.) and secondary cancers. Most of these side effect are rare, but it is not uncommon of most patients to experience a few of them to some degree.
two weeks ago
So, what happens now? I start by getting a few weeks to let the treatment finishing working and to rest. On the 8th of November I will undergo a battery of tests to determine if I need more treatment and the damage my body has sustain from the treatment thus far. With any luck I will be told that I am cancer free and I can start the process of rebuilding and reshaping my life. If I am not cancer free, the picture becomes more grave. Because I already received a regiment of chemo and cycle of radiation any cancer in my system would be considered resistant to treatment. This means that my further treatment would be considered a relapse of cancer. As a general rule, relapses are harder to eradicate. Must people are only treated for one relapse. Any cancer after that is very bad news. If a relapse should occur, I would more than likely receive bone marrow transplant. This procedure is as fun as it sounds! For all of you that are against stem cell research, I suggest you do a little reading into bone marrow transplants and other procedure that involve stems cells. What you find might surprise you. So why bring all this up? My last two chest x-rays have shown an enlargement of the tumor in my chest. Radiation was suppose to shrink the tumor that was left behind by the drugs (now 11cm x 6cm x11cm as opposed to the 17.5cm x 10cm x 17.5cm it was in June). It is likely that the tumor is larger at the moment become it is inflamed by the radiation. It is also possible that new cancer cells are growing, although this is unlikely. At this point all that can be done is to wait and see...
five weeks ago
It has been, in many ways, a difficult month emotionally. But, as I found during chemo,
one finds away to focus and dig deep to find the strength to endure. With radiation, things have been easier, giving me chance to realize how much life has changed since I start this whole ordeal. My strength is returning bit by bit and requires me to be patience with myself, something I not yet all that great at =-). This is especially true when it comes to music. My hands have shown some improvement since I ended chemo (Sept. 4th) but still don't possess enough strength and feeling to make playing enjoyable, or in some cases practical. I have been trying to get some exercise and stay active. I have put more than 200 miles on my bike in the past 6 weeks and am now a coach on my sister's 12 year-olds softball team, which keeps me running. I have been teaching a few bassoon lesson here and there, and will start working a more regular job next week.
I hope this finds you all in good health and spirit! We know not what the future bring but in my heart, I am encouraged.
Always,
Darrel
Well, by a miscalculation by my radiologist I am finished with radiation today, five days earlier than expected. I can say that I am glad they caught their mistake today, as I have received the correct dose of treatment already and three extra shots would have left me a little over cooked. With radiation now behind me, I can that it's side effect to this point are nothing when compared to Chemo. Fatigue, burning in the chest, and an un-natural "sunburn" are all I have to show for the experience. Still, there are a number of long term side effects that I may yet encounter. These include shingles, fatigue, thyroid problems, heart and lung damage from the inaction of radiation and chemo drugs, Lhermitte syndrome (a break down of the covering on the spinal cord resulting in an electric sensation in the feet and hands.) and secondary cancers. Most of these side effect are rare, but it is not uncommon of most patients to experience a few of them to some degree.
two weeks ago
So, what happens now? I start by getting a few weeks to let the treatment finishing working and to rest. On the 8th of November I will undergo a battery of tests to determine if I need more treatment and the damage my body has sustain from the treatment thus far. With any luck I will be told that I am cancer free and I can start the process of rebuilding and reshaping my life. If I am not cancer free, the picture becomes more grave. Because I already received a regiment of chemo and cycle of radiation any cancer in my system would be considered resistant to treatment. This means that my further treatment would be considered a relapse of cancer. As a general rule, relapses are harder to eradicate. Must people are only treated for one relapse. Any cancer after that is very bad news. If a relapse should occur, I would more than likely receive bone marrow transplant. This procedure is as fun as it sounds! For all of you that are against stem cell research, I suggest you do a little reading into bone marrow transplants and other procedure that involve stems cells. What you find might surprise you. So why bring all this up? My last two chest x-rays have shown an enlargement of the tumor in my chest. Radiation was suppose to shrink the tumor that was left behind by the drugs (now 11cm x 6cm x11cm as opposed to the 17.5cm x 10cm x 17.5cm it was in June). It is likely that the tumor is larger at the moment become it is inflamed by the radiation. It is also possible that new cancer cells are growing, although this is unlikely. At this point all that can be done is to wait and see...
five weeks ago
It has been, in many ways, a difficult month emotionally. But, as I found during chemo,
one finds away to focus and dig deep to find the strength to endure. With radiation, things have been easier, giving me chance to realize how much life has changed since I start this whole ordeal. My strength is returning bit by bit and requires me to be patience with myself, something I not yet all that great at =-). This is especially true when it comes to music. My hands have shown some improvement since I ended chemo (Sept. 4th) but still don't possess enough strength and feeling to make playing enjoyable, or in some cases practical. I have been trying to get some exercise and stay active. I have put more than 200 miles on my bike in the past 6 weeks and am now a coach on my sister's 12 year-olds softball team, which keeps me running. I have been teaching a few bassoon lesson here and there, and will start working a more regular job next week.
I hope this finds you all in good health and spirit! We know not what the future bring but in my heart, I am encouraged.
Always,
Darrel
Cancer Sept 22
I apologize for the long time between emails, but the truth is that cancer treatment is not all that exciting. Chemo therapy comes to dominate your life and the rhythm of the dosings cause time to past with distorted speed.
That is not to say that things haven't been interesting. The third cycle of treatment, which started at the beginning of August, was especially hard to get through as a lot of my friends left for school (including Jenny) and the neuropathy (nerve damage) in my hands finally made the bassoon impossible to hold, much less play. With another cycle left to go it was hard to see the light at the end of the tunnel. The fourth cycle, which finished on the fourth of this month, founded me in better spirits and I managed to make it through it without puking on my nurses or getting sent to the hospital. Unfortunately, as the amount of cancer in the body decreases the damage done to normal cells increases, so as the treatments go on one tends to feel more of the poison. Those of you who have seen me without a shirt would be surprised to learn that I am almost (almost) without chest hair...
Chemo, for the time being, is over and done with, and is something I will hopefully never have to go through again. That is not to say that I am cancer free. The next step will be a round of radiation to "clean-up" any cancer cells not killed by chemo. With large tumors (like mine) there are often parts that are cut off from blood vessels and are therefore unaffected by chemo. The job of radiation to kill these cell and lower the chance of a relapse. A round of radiation consist of 17 shots of gamma rays (think uber X-ray) given every business day (radiologist don't work on the weekend?) for about 20 minutes. The ray of radiation is very focused and will only 'touch' the areas where the tumor is/was. For me this is especially important as my tumor is touching my heart, lungs, and esophagus. Radiation brings with it it's own random grab bag of side effect the most immediate being; cough, skin irritation, inflamed esophagus (think the most wicked heart burn you've ever had) and fatigue. There are a number of long term side effect, none of which are very pleasant.
After the radiation is over (Oct. 20th?) I'll have about a week of recovery time and then a whole battery of test to determine if I need more chemo or if I can enter the second step of cancer survivorship known as remission.
As for myself, I am doing okay. I have regain some of my strength back since ending chemo and have been riding my road bike fairly consistently to help myself regain some semblance of endurance! My hands and feet are slowly over coming the neuropathy and I resumed playing the bassoon again about two weeks ago. The playing at the moment is frustrating as the correct signals being sent are being lost some where before they reach my fingers. I am hoping that no long-term damage has been done, although it maybe six months to a year before I know for sure.
Many people have been extremely helpful throughout this whole journey and while I can't thank everyone here I would like to recognize a few for being generous with their time, knowledge, and patience. Many thanks to Per Hannevold, James Brody, Shelly Monroe, Stacie Smith, and Jason Shin for all they have done. I wouldn't be were I am without all your help!
I wish you all the best!
Sincerely,
Darrel
That is not to say that things haven't been interesting. The third cycle of treatment, which started at the beginning of August, was especially hard to get through as a lot of my friends left for school (including Jenny) and the neuropathy (nerve damage) in my hands finally made the bassoon impossible to hold, much less play. With another cycle left to go it was hard to see the light at the end of the tunnel. The fourth cycle, which finished on the fourth of this month, founded me in better spirits and I managed to make it through it without puking on my nurses or getting sent to the hospital. Unfortunately, as the amount of cancer in the body decreases the damage done to normal cells increases, so as the treatments go on one tends to feel more of the poison. Those of you who have seen me without a shirt would be surprised to learn that I am almost (almost) without chest hair...
Chemo, for the time being, is over and done with, and is something I will hopefully never have to go through again. That is not to say that I am cancer free. The next step will be a round of radiation to "clean-up" any cancer cells not killed by chemo. With large tumors (like mine) there are often parts that are cut off from blood vessels and are therefore unaffected by chemo. The job of radiation to kill these cell and lower the chance of a relapse. A round of radiation consist of 17 shots of gamma rays (think uber X-ray) given every business day (radiologist don't work on the weekend?) for about 20 minutes. The ray of radiation is very focused and will only 'touch' the areas where the tumor is/was. For me this is especially important as my tumor is touching my heart, lungs, and esophagus. Radiation brings with it it's own random grab bag of side effect the most immediate being; cough, skin irritation, inflamed esophagus (think the most wicked heart burn you've ever had) and fatigue. There are a number of long term side effect, none of which are very pleasant.
After the radiation is over (Oct. 20th?) I'll have about a week of recovery time and then a whole battery of test to determine if I need more chemo or if I can enter the second step of cancer survivorship known as remission.
As for myself, I am doing okay. I have regain some of my strength back since ending chemo and have been riding my road bike fairly consistently to help myself regain some semblance of endurance! My hands and feet are slowly over coming the neuropathy and I resumed playing the bassoon again about two weeks ago. The playing at the moment is frustrating as the correct signals being sent are being lost some where before they reach my fingers. I am hoping that no long-term damage has been done, although it maybe six months to a year before I know for sure.
Many people have been extremely helpful throughout this whole journey and while I can't thank everyone here I would like to recognize a few for being generous with their time, knowledge, and patience. Many thanks to Per Hannevold, James Brody, Shelly Monroe, Stacie Smith, and Jason Shin for all they have done. I wouldn't be were I am without all your help!
I wish you all the best!
Sincerely,
Darrel
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